1. A Brief History of Palliative Care
David L. Sharp, M.D.
Grand Rapids Medical Education Partners
Hospice of Michigan – Grand Rapids

2. David L. Sharp, M.D. – brief bio
B.S./M.D. - University of Pittsburgh
pilot program - Family Medicine, Flemington, NJ
moved to Grand Rapids in 1986 when daughter Martie matriculated at Hope College
Board Certified in Family Medicine and Hospice and Palliative Care
spiritual gift: mercy
Inpatient Physician – Trillium Woods
Medical Director – Hospice of Michigan – Grand Rapids to present

4. our goals today… reach a better understanding of:
how far back “palliative care” reaches
some historical landmarks along the way
recent history: compassion pushes back against technology
palliative care today – Economics the future of palliative care
meet the art of Deidre Scherer

6. one of the ironies of life:
By the time you’re old enough to know your way around, you’re not going anywhere.

7. Palliative Care is not exactly a new concept…
“Cure sometimes,
treat often,
comfort always.”
Hippocrates
B.C.

8. Ancient China special houses – “death houses”
destitute people were allowed to go there to live and die

9. New Zealand Maoris tribe
family of dead person is given support in all possible ways
entire tribe joins in mourning

10. East Africa
Tribal elders offer spiritual and practical support to the dying person and their family

11. a rest along the way…
During the Crusades in the Middle Ages, monasteries provided care for
the sick and dying
the hungry wayfarer
the woman in labor
the needy poor
the orphan
the leper

12. Middle Ages
Religious orders established “hospices” at key crossroads on the way to religious shrines
Santiago de Compostela (Spain)
Chartres (France)
Rome (Italy)
ironically, people died in these shelters while on pilgrimages seeking cures for their diseases
Santiago de Compostela built on the site of discovery of the bones of apostle St. James found 813; James had been brought to Galacia for burial
Cathedral of Our Lady of Chartres 50 miles SW of Paris constructed 1193 – 1250 – site of Sancta Camisa, said to be the tunic worn by Virgin Jesus’ birth – crypts used as a hospital during ergotism (St. Anthony’s fire) affliced many victims in the middle ages

14. 16th – 18th centuries
religious orders offered care of the sick and dying in local or regional institutions
but – most people died at home, care for by the women in their families

15. 17th Century
A young priest, St. Vincent de Paul, founded the holy order of Sisters of Charity in Paris, 1633
They, in turn, opened more than 40 houses for the poor, the sick, the dying
motto: “The charity of Christ impels us”

16. 1800’s
Madame Garnier of Lyon, France, opened a “calvaire” to care for dying
1879 – Our Lady’s Hospice – Dublin – cares only for the dying
By late 19th century, increase in municipal or charitably-financed infirmaries, almshouses and hospitals begins the “medicalizing” of dying

17. 1900
Five of the Irish Sisters of Charity founded St. Joseph’s Convent, London
Began visiting the sick in their homes

18. 1935
Interest grows in the psycho-social aspects of dying and bereavement, sparked by the work of Worcester, Bowlby, Lindemann, Hinton, Kubler-Ross, Raphael, Worden and others

19. Europe and USA
Up until 19th century, belief was that the family and church should be responsible for the dying person and also help loved ones cope with situation

20. Mid-20th century
The expansion of medical knowledge, fueled by wartime experiences, results in almost 80% of people dying in hospitals or a nursing home

21.
Cicely Saunders – first a social worker, then a nurse and finally a physician
Works at St. Joseph’s Hospice studying pain control in advanced cancer patients
Pioneered concept of opioids “given by the clock” instead of as “prn” pain control

22. Dame Cicely Saunders
nurse, physician, founder of St. Christopher’s Hospice, Sydenham, south London, 1967
“No human life, now matter how wretched, should be denied dignity and love.”

23. Dr. Cicely Saunders
“We need to help the dying to live until they die and their families to live on…”
Author of three books on hospice care:
“Care of the Dying,” 1960
“The Management of Terminal Disease,” 1978
“Living with Dying,” 1983

24. 1967 Dr. Saunders opens St. Christopher’s Hospice in London
Emphasized multi-disciplinary approach to caring for dying
Regular use of opioids
Careful attention to social, spiritual and psychological suffering of patients and their families

26. 1974 - New Haven, Connecticut
Nurses “carry the banner” from London to America and begin teaching Dr. Saunders’ principles
New Haven Hospice in Branford begins caring for patients with cancer, A.L.S. and other fatal illnesses

28. Canada -1975
Dr. Balfour Mount – founds hospice and palliative care work in two North American hospital facilities
St. Boniface Hospital - Winnipeg
Royal Victoria Hospital - Montreal

29. British Columbia
Victoria Hospice founded as “The Victoria Association for Care of the Dying”
pilot program successful – became Hospice Victoria 1982
began with 7 acute-care beds in Royal Jubilee Hospital

31. 1975 - 1978 Hospices and palliative care units open across USA
California
Support team at St. Luke’s in NYC
Church Hospice – Baltimore
Cleveland Clinic
Medical College of Wisconsin

32. 1984
Congress adds Hospice Benefit

33. 2009 Most recent financial data shows: 11,633 home health agencies
3,533 hospices
Center for Medicare & Medicaid Services, OSCAR data, April, 2011

34. 2009 – USA hospice care USA stats 1,123,495 covered patients
77,822,892 covered days of care
$12 billion reimbursement
($12,085,785,062.15)
Source: CMS OSCAR data, April, 2011

36. 2009 – Michigan 607 home health agencies 104 hospices
41,918 total hospice patients
2,477,382 covered hospice days
$378,947, hospice reimbursement
CMS OCSAR data, April, 2011

38. Philosophy before function
Palliative care (symptomatic and supportive care) is generally withheld until all attempts to treat the underlying disease and other medical problems are exhausted; many times palliative care is offered with little time left for living.

39. Philosophy before function 2
Palliative care should be considered in conjunction with active treatment, and, as death nears, palliative care becomes more important as active treatment, while cure becomes less important

40. Philosophy before function 2
Palliative care should be considered in conjunction with active treatment, and, as death nears, palliative care becomes more important as active treatment, while cure becomes less important

42. Modern definition
Advanced knowledge/skills to prevent and relieve suffering experienced by patients with life-limiting, life-threatening and terminal illnesses.
Expertise in assessment of patients with advanced disease and catastrophic injury

43. Modern definition 2
Coordination of interdisciplinary patient and family-centered care in diverse settings
Use of specialized care systems including hospice, management of the imminently dying patient and legal and ethical decision making in end-of-life care

44. Modern definition 3
Work with an interdisciplinary hospice or palliative care team to maximize quality of life while addressing physical, psychological, social and spiritual needs of both patients and family members thru illness, dying and bereavement

46. Drivers of palliative care
Sheer demographics – growth of elder population with diseases of senescence
Conventional medicine – enabling younger patients with previously-fatal diseases to survive longer
Emerging infectious diseases (HIV-AIDS, hep C, resurgent tbc, etc.)

48. U.S.A. Demographics I
over-65 age group will double between 2000 and 2030
over 70 million >age 65 by 2030
>age 85: 4.2 million in 2000 to 8.9 million in 2030
by 2050 we will may well have 834,000 persons over 100 years old

49. U.S.A. Demographics II
we post-moderns tend to think of “death” as an option rather than a reality; however…
roughly 100% of Americans are expected to die at the end of their lifetimes.

50. What is “Futile care?”
use of expensive technology to prolong the natural dying process of terminally ill persons, with no realistic expectation of longer survival, clinical improvement or better quality of life

51. An artist’s rendering of “futility…”

52. Sisyphus, by Tiziano Vecelli, 1490-1576
In Greek mythology, Sisyphus was doomed by Zeus to forever carry a huge rock uphill, only to have it roll back down again; this went on day after day for eternity….

53. So … “How will we know….?”
patients are often the first to know “when it’s bad news”
a sensing of body language, non-verbal communication, insight into one’s own body and destiny
innate sense of the timing of life
importance of “the will to live”

55. “But, how will we know….?” consensus on futility is reached between:
the patient
the family (or best friends as family
surrogate)
the spiritual advisor (pastor, priest, rabbi,
etc.)
the patient’s personal physician

57. Politics of palliative care
Hospitals held accountable for 30-day re-admissions
DRG-type “comprehensive” reimbursement schemes
Need to reduce ER visits and “un-necessary” hospitalizations
Discussions of “futility” – mandatory or simply essential?

58. Allen Stewart Konigsberg 1935-????

59. Woody Allen:
“I’m not afraid to die. I just don’t want to be there when it happens.”

62. History of Palliative Care: Your Questions Please…
David L. Sharp, M.D.
Grand Rapids Medical Education Partners
Hospice of Michigan
989 Spaulding SE
Ada, Michigan 49301